European Cystic Fibrosis Awareness Week 2015
“Our every breath a step closer to our cure for 2015
was our motto this year as we await the approval of innovative treatments.” With this phrase, the President of the Hellenic Cystic Fibrosis Association, Dimitris Kondopidis, kicked off the European Cystic Fibrosis Week 2015 in our country on Saturday, November 14, at the annual Cystic Fibrosis Conference held every year. At the same time, in cooperation with the Cystic Fibrosis Parents’ Association of Northern Greece, a series of events, awareness-raising activities, TV spots and interviews with personal testimonies of Cystic Fibrosis patients were held. Finally, on the occasion of the approval of the drug Orkambi by the European Commission, the necessary intervention was made in the state where a question was submitted to the Parliament to the Minister of Health regarding the issues faced in our country by patients with Cystic Fibrosis. In more detail the actions for the European Cystic Fibrosis Week.
TV Spot 40” and Video 2 min ”Each Breath – Living with CF”
For the first time a 40” TV spot about prenatal screening and a short film about living with Cystic Fibrosis was presented, starring and directed by the patients themselves!
40” spot on prenatal screening (to see the spot click here)
2′ video ”Each Breath – Living with CF” (to watch the video click here)
Annual Cystic Fibrosis Workshop (Saturday 14 November)
Held in a packed auditorium with patients, parents and health professionals. Important representatives of institutions attended, declaring their support and their real cooperation, such as Mr. E. Papasavvas, Governor of the Children’s Hospital – St. Sophia (children’s C.F. unit), Mrs. D. Tsagdi, Governor of the Sismanoglio Hospital (adult C.F. unit) and Mr. C. D. Secretary of the NGO Smile of the Child, making a positive contribution to solving the issues faced by Cystic Fibrosis patients. The entire scientific community of Cystic Fibrosis from all over Greece brought us all the new developments from the 38th Pan-European & 29th American C.F. Congress with the possibility of questions and interactive discussion with the public. Great importance was given to lung transplants, for which apart from the discussion with the audience, Mr. Karabinis, President of the National Transplantation Organization (NTO) and Mrs. G. Menoudakou, Coordinator of the NOM, attended a parallel meeting with the participation of the team of doctors of the cardiac surgery unit at the Papanikolaou, Thessaloniki where efforts are being made in the pre- and post-transplantation screening process. Touching were the descriptions of the personal experience of patients with C.F., Mrs. Fyka and Mrs. Georgaki, who have undergone lung transplantation. The amazing results of exercise & rehabilitation performed in both adults (Athens) and children (Thessaloniki) were also mentioned. Finally, it was presented how a cycle of successful interventions 2012-2015 of C.F. patients was closed successfully achieving decades-old requests in our country.
(for the Press Release click here)
Participation in AdvisorCommittee for ATALUREN (PTC) – Barcelona (Thursday 19 November)
Participation of the President of the Hellenic Cystic Fibrosis Association D. Kontopidis, together with representatives from other European C.F. Associations in Barcelona. They were informed about the development and status regarding the launch and benefits of the drug Ataluren, while at the same time workshops with different topics were held as an occasion for constructive discussion, collaborations and more effective interventions of patients with CF together with related stakeholders.
Information booth at the Avenue MALLCenter
In the Avenue mall center with informative leaflets and ”eachbreath” products to inform the public about C.F. and especially young couples about prenatal screening.
Question to the Minister of Health in the Greek Parliament
to the Parliament of Greece, the MP of the “Potami” party, Mr. K. Bargiotas, regarding the serious problems faced by patients with Cystic Fibrosis in our country. Primarily, both bodies (EOF, EOPYY, KESY, IFET) and the scientific associate of the Minister of Health, Ms Papathanasiou, had been informed in previous meetings and letters, and we expect cooperation in order to solve them.
(for the question click here)
Personal testimony of a patient on TV – channel ”E”
The testimony of the transplant patient Stella Georgaki who had a 2nd lung transplant proving that there is a 3rd chance in life after the 2nd one in the show of the well-known presenter Mrs. T. Stephanidou
(for the video click here)
Photo shoot at the training session of PAOK football team in Thessaloniki
On the initiative of the Cystic Fibrosis Association of Northern Greece and the President of the Association, Mrs. R. Tzonou, young patients with C.F. attended the training session of the biggest football team of Thessaloniki, PAOK, which embraced this initiative and made their dream come true.
(for the video click here)
Athens Classic Marathon
A few days earlier at the beginning of November, the Athens Classic Marathon took place, where the Cystic Fibrosis Racing Team “eachbreath” officially participated for the first time with its new appearances.